2025 m. retųjų ligų dienos kampanija

The International Huntington Association, in collaboration with the European Huntington Association, is organizing a campaign for Rare Disease Day 2025, on the 28th February. The slogan for this year’s RDD […]
RDI pradeda jaunimo lyderystės programą

Rare Diseases International (RDI), announced the launch of the RDI Youth Leadership Programme, an initiative designed to engage and empower young people within the rare disease community. This programme aims […]
Dvylikametis išleido knygą vaikams apie Huntingtono ligą

Toronto student writes book so others will treat her grandpa kindly December 11, 2024 — Toronto, Ontario, Canada Most people have never heard of Huntington’s disease. This lack of awareness […]
"UniQure" praneša apie suderinimą su FDA dėl pagrindinių pagreitinto AMT-130 patvirtinimo kelio elementų

Yesterday, uniQure issued a press release announcing alignment with the US Food and Drug Administration (FDA) on key elements of an accelerated approval pathway for uniQure‘s AMT-130 program in Huntington’s […]
"The Present", dokumentinis filmas su Dimitri Poffé, jau pasiekiamas per "Youtube

Dimitri Poffé is an already known member of the HD Community. After testing positive for Huntington’s Disease, Dimitri embraced a bicycle journey through South America. In this project, called Explore […]
"PTC Therapeutics" sudaro pasaulinę licencijos ir bendradarbiavimo sutartį su "Novartis" dėl PTC518 Huntingtono ligos programos

December 2, 2024 – PTC to receive $1.0B in cash at closing –– PTC is eligible to receive up to $1.9B in development, regulatory and sales milestones –– PTC to share profits in the U.S. and […]
"Sage Therapeutics" nutraukia dalzanemdoro, skirto HD gydymui, plėtrą

The Phase 2 DIMENSION Study did not meet its primary endpoint Dalzanemdor was generally well-tolerated; no new safety signals were observed Based on these data, the Company does not plan […]
Partnerystės galia. Šveicarijos ir Kinijos pavyzdys.

In this video, Professor Jean-Marc Burgunder, head of the Huntington’s Disease (HD) centre in Bern Switzerland, and Xi Cao, President of the Chinese HD Association talk about the benefits of […]
Nauja knyga "Gyvenimas, kurį galima nugyventi" - tai pasakojimai žmonių, kuriems HD turėjo įtakos visame pasaulyje.

Spalio 25 d., 2024 m. spalio 25 d., Maskva, Aidaho valstija, JAVDžiaugiamės galėdami pranešti apie naujos knygos apie Huntingtono ligą (HD) "Gyvenimas, kurį galima išgyventi" pasirodymą: Pokalbiai su Huntingtono [...]
"LoQus23 Therapeutics" paskelbė apie 35 mln. svarų sterlingų finansavimą, skirtą naujam vaistui, kuriuo siekiama slopinti somatinį išsiplėtimą sergant Huntingtono liga, sukurti

Cambridge, UK, 2 October 2024 – LoQus23 Therapeutics Ltd (“LoQus23”), a private biotechnology company investigating small molecule drugs that could stop DNA instability and slow neurodegeneration in Huntington’s Disease, myotonic dystrophy […]